“You Can’t Look for Disparities Where Data Are Missing”: Interviews with Health Plans on Managing Race and Ethnicity Data in the Pursuit of Health Equity

Introduction: Many health plans in the United States are working to address disparities in care by race/ethnicity. A fundamental part of this work involves implementing processes for collecting race/ethnicity data to visualize where there are gaps for certain groups. Methods: A team of researchers at the National Committee for Quality Assurance interviewed health plans to understand how they collect and manage race/ethnicity data and to gain insights into how they overcome barriers to these practices. The research team purposively sampled and interviewed 13 health plans that report on the Healthcare Effectiveness Data and Information Set (HEDIS®), a widely used clinical quality measurement tool. Plans represented all product lines, and operate in a variety of United States geographic regions. Interview questions focused on how plans source race/ethnicity data, data granularity, processes for linking race/ethnicity data to quality performance metrics, and how data inform quality improvement efforts. Results: Participants highlighted four primary challenges to collecting and managing race/ethnicity data. First, there must be a balance between federal, state, and accreditation standards about which groups to include in data collection. Second, plans must balance the number of groups included with their ability to meaningfully report on those groups. Third, there are multiple sources of race/ethnicity data, requiring prioritization of certain data sources over others. Fourth, plans need an organizational structure conducive to such efforts, which includes the capacity for smooth interdepartmental collaboration and the organizational priority to collect, organize, and act on race and ethnicity data. Discussion: Despite the challenges associated with data wrangling, many plans emphasized interdepartmental collaboration as necessary for success in collecting and managing high-quality data to understand where there are health disparities by race/ethnicity, and to inform efforts aimed at addressing gaps in care.